A Letter to Julia

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Chapter 6

Sickness, Death and New Beginnings

Helen and I felt the night Mary didn’t turn up at the Park and Ride took several years off of our lives, but Mary seemed none the worse for wear.She never felt afraid, even among the homeless people.Mary just couldn’t figure out what she was supposed to do.She knew she was cold but despite the fact that her coat sat on the bench right next to her, she didn’t realize that she could put it on and get warm.She thought that perhaps her mom might be worried about her and noticed a pay phone, but couldn’t figure out that she could actually just go make that phone call and save her mom from worrying.

Occasionally Helen will become shaky and weak when she hasn’t eaten.A quick snack of cheese remedies the situation.Mary had the same problem with not eating on a regular basis, but she would complain that along with feeling weak she would have trouble thinking clearly.A quick snack would be the cure as happened when she was offered the candy bar by the homeless man.

Helen and I felt this was serious enough to warrant another trip to the Polyclinic in downtown Seattle.Mary’s Lupus doctor was also concerned and recommended that Mary go see the neurologist Dr. Stillmen.Mary had to yet undergo another series of unpleasant tests including a spinal tap.As other parents of children with chronic illnesses can relate to, it is a struggle to maintain a normal family life.We felt we were doing a pretty good job of it, but this new concern added to the struggle.Nothing conclusive came from the tests, but Dr. Stillmen was certain that Mary probably had in addition to Lupus, Central Nervous System Lupus.This is where Lupus is affecting the brain, mostly in not so good ways.So, here we go again with another illness to worry about.

Mary seemed to us at the time no different than she had been before the incident and to this day she never has had a repeat of the terrible night.But when a smart specialist is concerned, that made us concerned.Dr. Stillmen decided to put Mary on a type of medication, Depakote, which would necessitate frequent blood tests to monitor the level of the drug in Mary’s body. Mary would have to keep taking increasing doses of the drug until the level in her blood stabilized at the right level.Dr. Stillmen carefully explained that the drug would be ineffective until the correct level was reached.

I was scheduled to go on a field trip to the Midwest in February through March to study winter storms.As always we planned to take all our children, except our oldest daughter Amy who was living with her husband in Colorado.On these extended trips we enrolled the kids in the local public schools and attended the local churches.This was great experience for all of us and a wonderful way to get to know the new communities.Mary was in junior college and she would only have to miss one quarter. With all that had happened we were afraid to leave her alone.Mary was doing OK with the doses of Depakote so far, but the levels in her blood were not high enough.Dr. Stillmen was fine with Mary coming with us on the field trip as long as we could arrange to have Mary’s blood drawn weekly and the results sent to him.We arranged this before we left on our trip.

On January 22, 1992 our faithful Checker loaded with Helen, Mary, Adam, Megan, children’s toys, household stuff and me at the wheel chugged out of the driveway of our Maple Valley log home and headed east.We arrived at noon on the 28th in Overland Park, Kansas.All of the rest of the research crew from the University of Washington were lodged in an extended stay motel where beds were changed and rooms cleaned and meals were eaten out.

We were staying at a new development called Pointe Royal in a nice two floor condo with bedrooms for everyone.Of course, to fit within the research budget we had to cook for ourselves and keep our own house, but we preferred that.We quickly settled in as I had to be ready to start chasing storms the next day.Mary and Adam were delighted to discover that right next door with adjoining patios was a friendly Boxer dog called Frazier.Helen and I were overjoyed to learn that we must keep the heat on at 72 degrees at all times, day and night, and that every room had real rugs.This was a treat for us since we only heated a few rooms in our log home in Hobart, never at night, and all our floors there were cold wood.

We were soon very glad that we had decided to take Mary with us.Dr. Stillmen was increasing the dosage of Depakote trying to obtain the necessary levels in Mary’s body.These new increases were making Mary even more nauseas than she normally was.The weekly blood draws were bad enough, now she had to suffer increased nausea.After Mary’s episode in downtown Seattle she had returned to her normal chronic tiredness and minor nausea.However, Dr. Stillmens insistence on the necessity of Mary taking Depakote pushed us forward.

Mary was now questioning Dr. Stillmen on how much longer the nausea would go on.He wanted Mary to continue the increase in dosage until the levels he wanted were reached.This meant enduring the nausea until that time, then hoping that when she was on a steady dose eventually she would feel better.It was torture watching Mary endure this new assault on her body.In our spare time on field trips we always visited every museum, park and local interesting place we could find. Overland Park was right next to Kansas City, Missouri and Kansas City, Kansas.There was one road where going one way we were in Kansas and going another we were in Missouri.I would load us into the Checker and drive around and around up one way then down the next going from one state to another laughing all the time.We even saw the Hallmark Museum in Kansas City, Missouri. We still had fun in spite of Mary’s trials with Depakote.

Mary was beginning to really question the wisdom of continuing with trying to obtain the proper levels of Depakote.She didn’t feel like she had Central Nervous System Lupus and she was more certain everyday that her episode was due to lack of food and the tendency of Locatelli women to be susceptible to blood sugar swings.Dr. Stillmen was more and more insistent that she continue with Depakote and Mary was more and more nauseated.Finally Mary had had enough and decided on her own to stop taking Depakote.There was never any definitive test that Mary took that showed she actually had Central Nervous System Lupus and that helped Mary make her mind up. Since Dr. Stillmen was not OK with that decision Mary stopped seeing him also.Mary soon got over the extreme nausea, but she feels her stomach has never fully recovered from Depakote.

Another Christmas has come and gone.Goodbye to 2009. We are having no luck finding a lawyer to take Mary’s case.It seems most lawyers are no longer taking Mirapex cases.I’ve sent detailed information to several but to no avail.Later we found out from a kind person that worked in a law office that some lawyers were being required to sign agreements to not take any further Mirapex cases if they were granted settlements for their clients.But we didn’t know any of this at this time.All we knew was that Mary and her family were in the middle of bankruptcy, Helen and I were falling behind on our house payments due to the financial burden of helping Mary, and they were stuck in a very small cabin with no reliable heat, moldy walls and a leaky roof.

Our Enumclaw flower shop had lost about $29,000 dollars in 2009. This isn’t helping us.But as I write this Helen reminds me to be thankful for what we have.As we enter 2010 Mary and Joe are still married and our granddaughter Julia seems well adjusted and is a bright student doing well in school.Our extended family is still tight knit, supportive and solid. We have all our children and grandchildren together for every holiday and family birthday. Helen, me and Mary are working long hours at the flower shop for no money, but working there with her understanding parents has brought Mary back.She can never return to her lucrative business, but could be successful in creative endeavors.

Now that I’m writing the story of Mary’s struggle with the drug Depakote it really brings out the contrast for me between her experience with Depakote and Mirapex.Mary’s doctor, Doctor Stillmen, was insistent that Mary continue taking Depakote until the required dosage was reached.Mary was able to thoughtfully consider how she felt against the weak diagnoses of Central Nervous System Lupus.Helen and I were fine with Mary’s decision against her doctors wishes, to discontinue taking Depakote. We felt that she was capable of making an informed decision for herself.

In contrast, Mirapex robbed Mary of the ability to understand what was happening to her.She was oblivious to the destruction she was causing around her.Neither bankruptcy, nor a neglected daughter, nor a falling apart home could shake her optimism.Mary would have never continued on Mirapex, just as she made the decision to stop taking Depakote, if Mirapex hadn’t taken over her mind.Mary never considered a lawsuit against the manufacturers of Depakote since she understood that all drugs can have side effects and she was capable of deciding if the side effects were worth the benefits.

The rest of our stay in the Midwest was normal family time for us.We were, however, initiated into Midwest weather.Cold fronts passed through the Pacific Northwest in winter just as they did in the Midwest, but there the cold air was warmed by the proximity to the Pacific Ocean.Often in the Pacific Northwest cold frontal passages only meant the temperature dropping from 45 degrees to 40 degrees.We soon learned that it was a different story in the Midwest.When we looked north from our condo in Overland Park all that stood between us and the Arctic was a few stunted trees.I was on duty from early morning Monday the ninth of March to about noon watching the radar and routing research aircraft through interesting weather.I came home and went to bed to catch up on my sleep from being up all night.Helen and Mary were going to walk north up to Rosana Square to do some shopping.I warned them that a cold front would be coming soon, but they assured me that they would be home in plenty of time.Consequently, they left in only t-shirts as the temperature when I got home was in the 70’s.Later when I woke up I found out that while they were inside at Rosana Square the temperature dropped to the 30’s.They had a very cold and windy fast walk home.Such was our first introduction to Midwest weather.The other introduction for Adam was the tornado shelters at his school.Thankfully he never had to experience them first hand!

In March the temperature did reach into the 70’s more often and the outside pool at Pointe Royal was opened.Seventy degrees or so seemed warm to us as that is a normal sunny day in Western Washington in the summer.So, we made good use of the pool on nice days.At least the days seemed like outdoor swimming ones to us, but apparently not to the locals who didn’t use the outdoor pool at all.

Helen wrote to my father every week about what we were doing.We had asked him to fly out and visit us in Kansas, but even though he was in very good health, he was reluctant to leave his home unattended in the winter.When we started the drive home on Wednesday the 18th of March my father was ready for us to return. We visited our daughter Amy and her husband Mark in Boulder, Colorado.Mark was there working on his doctoral thesis.Visiting relatives in Butte, Montana was next where they helped us dig up some Mastodon teeth in a spot just outside of town.Then it was onto Western Washington and home.However, just before home I noticed that the front of the Checker was shaking more than usual.We stopped at a rest stop a few miles before Snoqualmie Pass and I noticed a bulge on the side of one of the front tires.With four kids and a scientist’s salary I had to make tires stretch as far as possible before replacement.I drove much slower from then until home.We drove through our gate on the 28th and the 30th I replaced the tires.

We drove into West Seattle to visit my father on the 29th.It was nice to be together again.We walked to the local beach along Puget Sound and had dinner together.Mary stayed in with my dad for a few days and we went home and returned to our daily routines. Mary’s grandfather took Mary on a tour of all the old places he had been in Seattle.He showed her the apartment that Mom stayed in when she first came to Seattle, the hill where he and Mom, when they were dating, watched cars sliding down in the winter when it snowed, the house he lived in when he came to Seattle as a young boy, the schools he attended and other important memory places. My father was still living in the house he custom built in 1949 and was able to drive Mary on that memory tour.On April second Helen brought Mary home to Hobart.

My father and I worked together on weekends on projects around our house and my brother called him every day at noon to talk.My brother couldn’t reach him at noon on April 9th, but we weren’t concerned as he had an active social life.When my brother still couldn’t reach him in the evening we became concerned and asked the neighbor Peter Lange to check on him.Peter found the house dark except for the TV flickering in the kitchen.My brother started into town and Peter used the hidden key to get into the house.My father was lying alongside the kitchen table.He died while enjoying the view from his kitchen table.We arrived just after my brother did and Helen and I kept Mary, Adam and Megan in the bedroom while the funeral home picked up my dad.The next day Mary came into our bed in the morning and we just lay there stunned at his sudden death.Thankfully Helen was able to take charge of the situation, call the necessary people, and start the arrangements for consultation at the Catholic Church in West Seattle and the local funeral home.

We were all saddened at my father’s death, but Mary took it the hardest of all of us.She had been the closest to her grandfather since she was born and especially so after Mom died. Looking back on my father’s death we realize it was a nice way to die.He was still in his own home.He dreaded having to leave it and move into an assisted living place, and he had just spent a wonderful time with Mary.It doesn’t get much better than that.

Helen and I were afraid the earlier sudden deaths in the family might have triggered the onset of Lupus in Mary.Now along with the sadness of my father’s passing we were very worried about Mary.She had weathered the trauma of Depakote and stood up for herself against a persistent doctor.She had done really well in her first quarter at Bellevue Community College.Now the shock of her grandfather’s death threw Mary off of the goal she had for being an interior designer.Mary was always artistic and creative, and where Lupus kept her from being as physically active as she wanted it didn’t hinder her creativity.Now Mary switched to an AA degree with the goal of transferring to the University of Washington.It was a more ambitious and strenuous goal, especially for someone with a chronic illness.Helen and I fully supported Mary in her decision, but that didn’t mean we didn’t continue to worry if she would finally overdo and relapse into a more serious case of Lupus.

On Saturday April 18, 1992 my family and my brother’s took my father’s ashes and distributed them on Mt. Walker, a mountain my father could see daily from his West Seattle home.He loved the mountains and once mentioned to me that he would like his ashes there.Some of his ashes we saved and they were buried along side of my Mom at the Catholic Cemetery in Seattle’s University District.With that ended a long chapter in my life and an important one in Mary’s.

Life goes on and so did ours.Mary continued to finish junior college, but had to go a little longer due to her change in plans for a major.Part of the routine of our lives was the too often trips to the Polyclinic in Seattle for Mary’s frequent checkups.Lupus was always there, but thankfully not getting any worse.Mary continued to work to help pay for her tuition. Mary was accepted at the University of Washington on June 3rd of 1993.She would start university in the fall.Mary had commuted with me without any further incidents all through the rest of community college.Now we would travel together to the University where I could be there for the complete commute.Helen and I were no longer as worried about Mary as she had shown she was certainly capable of weathering the challenges of college and work even while burdened with a chronic illness.

With some of the inheritance from my father our family built a four car garage with a 1,200 square foot dance hall on top of it next to our Hobart log home.As always, we did all the work ourselves from drawing the plans, getting the permits, and installing all the plumbing and electrical.We started having dances for family and friends every month.That is where all our kids learned to dance.Mary loved to participate, but tired out quickly.We had friends from church that played in a Cajun band.One memorable dance they played while anyone that couldn’t dance shook noise makers, rattled bells and “strummed” washboards with their fingers.

It’s an old and tired cliché that life happens while we are making other plans, but I’m always amazed how small happenings in our lives can lead to life changing events.I had always done my own car repair including fixing the Checker after it had been totaled in a car accident.That car had been too faithful a companion to let it die in a crusher.When it was time for another brake job I figured it would be easy, but was I in for a surprise.The brakes were no longer available so I had to jack up the Checker, take off all the brakes, and then have them relined.I had done this several times before so I wasn’t expecting any problems.Anyone familiar with cars of the 1960’s would know that there were different length shoes for each wheel.The primary brake shoe which was smaller came on first, then the friction against the rotating wheel helped pull on the larger secondary brake shoe.This acted like a power brake where the momentum of the car helped stop it.This was pretty standard on all cars of that era as disk brakes were unheard of on domestic cars when the Checker was manufactured.

When the brake shoes came back with new linings I was dismayed to see that all the shoes were the same length.I immediately called up the company that redid the shoes, but they assured me that it would make no difference.I put them on, but the first time I tested them the Checker didn’t stop very well and it took a lot of pressure on the brake pedal.It seemed that the same length shoes were not working as planned.As the Checker only had non power brakes it always had been a little hard to stop, especially for my daughters.We drove the Checker as it was, but it was even harder to stop.Luckily Helen was very strong and could still stop the Checker.

On December 23, 1994 Helen was driving Adam, Megan, and Mary to Southcenter shopping mall when the brakes failed on the Checker.No one was hurt as Helen was able to get it over to the side of the road without incident.We had AAA, a necessity for a family with ancient cars, so a tow truck soon arrived.I will always believe that the increased stress on the braking system from the same length brake shoes had caused it to fail. Driving the tow truck was a young man, Joe Magalhaes, Mary’s age.Mary and Joe hit it off on the spot, it appeared to be “love at first sight”.Someone had to ride in the tow truck to show the way home and Mary jumped at the chance.What a chain of important events that botched brake repair shoeing started.

Joe had been in the Marines and had intended to make a career of it.He was well liked but during training began to fall behind his fellow Marines when stamina was needed.At first they thought he was faking and even pushed him harder.However when he ended up in the hospital they diagnosed an internal bleeding problem that was making him anemic and fatigued.The military doctors were unable to diagnose the cause for the bleeding and Joe was honorably discharged.When he returned home Joe was given a job at a high school friend’s towing company.Joe worried that he would have trouble finding a girlfriend with his undiagnosed condition.Mary was in a similar circumstance with her Lupus diagnoses.That certainly played a part in their mutual attraction.Christmas 1994 came with a new man in Mary’s life, one that would still be there as I write this chapter in 2010.

July 14, 2010.I’ve almost given up on finding a lawyer, but feel I need to fight back at Boheringer Ingelheim using the only resource I have; that is my 40 years experience as a scientist. I had suggested that we might try putting up a video on YouTube asking for help in tabulating the compulsive behaviors caused by Mirapex in order to counter the claim that one of Mary’s compulsive behaviors, excessive sewing,did not fit a Mirapex side effect.We also hoped to find allies in our so far lonely fight against Boheringer Ingelheim.I made the video a few days ago.Adam helped film me with his digital camera. We were warned by friends and relatives that the video might bring exposure we didn’t want to our family.So we started to call the video our “nuclear option”.An option we would employ as a last resort.Sitting here finishing this chapter I feel we have run out of other options.We are pretty much financially destroyed by Mirapex.We have a daughter struggling to keep up with their bankruptcy payments and now in danger of loosing their truckI just pushed the key to upload the video.We need to be prepared for anything to happen.

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